Today is day +11. We are in the double digits of days since transplant! Anna is doing what would be expected for how far in she is. A lot of people are asking me how Anna is doing/feeling. Anna is in a lot of pain. The mucositis is spreading down her digestive tract. I praise the Lord for the small comfort of a mouth with almost no sores at all, but her throat hurts a lot and it is spreading downward. The pain meds have changed to a stronger drug and the dosage changes moment by moment depending on how well she is able to keep it at bay. She has a continual drip, a button she can push every six minutes, and the ability to have the nurse give her a bigger one-time dose. These meds do make her a bit sleepy but it's better for her to be as pain free as possible right now. How long will this last you may be asking? We expect this to last at least another couple of weeks as the stem cells still need to start grafting before there will be any cells to attack the sores in her body. Even once the cells start grafting, the pain could get worse while they do their job. Swelling will also be a factor in which we must watch closely to make sure her airway doesn't close off.
Another question we have been asked is how much longer will Anna have to be in the hospital? Tomorrow she will have been in the hospital for 3 weeks already, and the average stay post transplant is about 30+ days. So being day +11 means we have at least 3 more weeks ahead. Some are able to go home around day +26 and yet others stay longer as their body needs more healing time. Friday or Saturday we should find out if Anna still needs to be in isolation. Being in isolation just means that she can't go out of her room unless she has a test that can't be done in her room, we as her parents/caretakers can't go into any of the community lounge spaces, and all nurses, doctors, and other staff must gown up and wear gloves. (This is because they go into each patient room and don't want to risk spreading any virus to others) We also can not have small children in to visit her as this virus is highly contagious.
This is a long painful road. There are no shortcuts. Anna's spirit remains positive and trusting in God's strength to get her through. We do have our moments. Tears do come. Tears that God allows and will hold in His hands. He cares. He comforts. He is giving us opportunity to give glory and honor to Him.
**Grandpa is doing considerably well. Today he had appointments at S.C.C.A. and we will find out more this evening after he meets with the doctor just what the plan of care will be. AML is a very aggressive form of leukemia and, left untreated, can give you only weeks to live. While he is in our home, we are taking his temperature multiple times a day to assure us there is no fever. We are also making sure he takes his medicines and stays comfortable. We feel so blessed to be able to "Honor our father" as God's Word encourages us to do by being able to take care of him! The hospital he will be at is about a mile from Children's. The post hospital care is what we were the most concerned about as it entails a commitment to daily (sometimes multiple times a day) outpatient appointments and special food care and preparation as well as bleaching down everything in the bathroom and kitchen after every use. We will already be doing these things for Anna and thought it logical for us to take this on for Grandpa too! There are so many restrictions that you really don't think about but you learn in classes that you must take if you are to be a caretaker. Things such as no fresh flowers, no potted plants, and no animals in the home. While I am a firm believer in building our immune systems with dirt, it is/will be dangerous for both Anna and Grandpa. Many life changes have already taken place such as hand sanitizer as a staple in our home and anywhere we go, and making sure we "isolate" anyone who feels like they are getting sick. We must be on the paranoid side and patrol our home to keep sickness away. Having the frame of mind that even a slight tummy ache, a stuffy nose, or even a bad headache could potentially be something that could be passed on to immune suppressed patients and make them deathly ill is the new way of thinking in the Houston home and has been since Anna's diagnosis back in October.
Thank you all again for your prayers for us and for those we have met at Children's. It is the best anyone can do! A special prayer for a 3 year old girl, Allistair Anderson, would be greatly appreciated! Allistair is directly under Anna and over one at the hospital. This is her second bout with cancer and it seems that the cancer is spreading very quickly. This precious little girl is in much pain and her treatment plan can be very hard for her to go through. Please pray for her parents to have the comfort and peace that only God can give. I have met her mama and she is a sweet Christian lady who brought a "bit of sunshine" to Anna by bringing her a fake potted plant. It sits in Anna's window as a reminder to pray for little Allistair and her family. We are so thankful for every opportunity!
***I will post pictures of Anna's birthday celebration soon!!! It's been a bit busy this past week so I thank you for your patience!***